Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Wednesday, April 24, 2013

After waking up at 8:am in Florida and really feeling the time difference I got ready while Josh and Hailey were still sleeping. I had orientation at 9:30 am and I would be getting our park tickets and learning of what the ins and outs of the village were. I will be writing a WHOLE post on just the village in a day or two, so more on that later.

I had planned on doing Disney's Animal Kingdom first and the weather that day was GREAT! It was sticky humid, but since there's no getting around that, I tried to ignore it. The whole family met up and we were ready to go! First stop at the Animal Kingdom - Africa for a Safari!

We had one happy girl!

Now this safari feels like what I would imagine a REAL safari felt like. The animals are up close and personal. They just cross the road when the want to, and even stop to look at you.

Rhinos!

Don't get mad at me, but I am not remembering every single kind of animal we saw...! I don't know what kind of birds these are.

Hippo

I would suppose that I should have taken a better picture of that bull like creature on the right, but what caught me off guard was that little mountain in front. That is a Termite Hill! The termites created that from scratch. Reminds me of making a mountain out of a mole hill. Knowing how many thousands of termites where hankered down in there made me itch.

Look how close we were to this Giraffe! I think we learned that it takes a Giraffe 30 seconds to sit down but only 5 seconds to get up. So pretty!

Flamingos. As Hailey would yell, "PINK!!"

There was also a petting area where they had donkey's, pigs, and Goats and we decided to check that out. Hailey was not a fan of petting any of these creatures. There aren't very many rides per say at Animal Kingdom, it's mostly a sight seeing place and it's not very big. We did stop in on a couple shows. One was the Lion King show where the music, floats, and costumes were just like the broadway musical ones! Another show we saw was Finding Nemo the Musical. Hailey LOVED that one, especially the bubbles that constantly fell from the ceiling making it feel as if you were underwater with Nemo. I had a hard time picturing how this show would be since there are NO songs in the movie!

Since there wasn't really much to do we decided to start getting autographs from out favorite characters. This is NOW Hailey's favorite part. Just 2 months ago she was screaming her head off at Disneyland when we saw a character! We had an escort that took us from character to character with no wait in line! Animal Kingdom was great about that. First up:

Mickey Mouse! Each character took special time to get down to Hailey's level and make her feel special! <3

Doug from UP!

Doug felt as if Josh could use a hug and a lick! LOL!!

Since Hailey's Granny and Gramps were NOT interested on going on a high speed roller coaster they offered to watch Hailey while the rest of us did. Have you ever heard of the ride:

Expedition EVEREST.? <--- Youtube Video. Well I had heard that I HAD to ride it and it was fun and not scary, and that was from little kids so I didn't think it could be THAT scary. Those kids were LIARS! I've never been on such a crazy coaster! I don't know if you want me to go into detail of this ride but here is a description I took from Wiki (skip if you have plans on wanting to ride this)

The train departs the station to the right and climbs a small lift leading to a short drop, then circles around to the 112-foot (34 m) lift hill, carrying the riders into the 200-foot-high (61 m) mountain. On the way up it passes through a ransacked temple with murals of the yeti, warning the riders that the mountain is his territory. At top of the mountain the train curves around the main peak and goes through a cave. When it emerges, it draws to a halt in front of track that has been torn apart, presumably by the yeti. During this brief stop, one can hear the hissing of the brakes as a switch behind the train is thrown. The train then rolls backwards along a new route that spirals down through the mountain, coming to a halt in a large cave, where riders see the yeti's shadow on the wall as he tears up more track. As the shadow moves away, the train rolls forward out of the mountain and down the main 80-foot (24 m) drop. It enters a 360° helix and speeds back up through another cave in the mountain, where the roars of the yeti are heard once more. The train exits from the rear of the mountain and enters a large helix before being lifted back into the mountain a final time. The train drops through a cave, where a large yeti is reaching down toward it. On reaching the bottom of this drop, riders return to the unloading dock and depart into a gift shop. One ride takes about 2 minutes and 50 seconds.

Wikipedia also lets you know that only 1 person has died on the ride since it's been open. Sounds fun right?

Being a guest of GKTW we got all our ride photos for free and I'm very confused as to why this photo isn't as bad as my Splash Mountain photo that I am really debating on posting!

So that's how we ended our day since the park closed at 6pm! Which was fine cause I could not walk a straight line after that ride. I was SO motion sick. We all decided to head back to the village and get some dinner and plan our day out for tomorrow. We will be going to the Magic Kingdom and Hailey will be transformed into a princess for a meet and greet!

Tuesday, April 23, 2013

Hailey is not a morning person. In order to be at the airport in time our ride would be at our house at 8:30 am. When I woke up and started to get ready I looked out the window and it was so gloomy. It was raining! We had to fly in the rain...ugh! Hailey woke up a little snotty and that didn't sit well with me. We all got dressed had our luggage by the door and ready to go and then our ride arrived!

Don't mind the recycling bins tossed about. Republic Services doesn't feel the need to put the bins back on your curb. They like to toss them back at your house when they come by. I don't know if we pay extra for this service or not...

We were all decked out in our Make a Wish shirts and the airport is only 20 minutes away. The ride there was a little slippery and we slid to a few of the stop lights. Hailey got car sick and ended up vomiting ALL OVER herself. Once we got to the airport we had to find a family bathroom and get cleaned up. I was hoping this wasn't a sign of things to come.

When we got to the airport the manager for Southwest airlines was waiting for us. He had our bags checked and taken care of and we were off to the TSA and security for our pat down. Every one was so nice to us. Asked us where we were going and told us to say hi to Mickey for them. Everything was going absolutely great. Thanks Jim for the royal treatment for our princess!

Jim made sure that the airline knew we had to place Hailey's CARES system and it kind of surprised me that no one has ever seen one before. I wanted to ask if I installed it right but my guess was as good as theirs...LOL! So we are off and on our way to Florida. 4 1/2 hours on a plane. One reason I don't travel is that I don't like being cooped up in a small place for too long.

I had all kinds of things lined up in case Hailey got restless. We had her iPad with games and movies ready to go when needed. Hailey loves stickers so I bought a book of 5,200 stickers. I brought paper and markers and if all else failed...Really big lollipops. Ones she could make a mess with but not gag herself with.

We looked out the window a lot but it wasn't like I could tell where we were. I knew if I wore a watch I'd be checking it every few minutes so instead I kept asking Josh. He discovered that SWA had something online for free that tells you where you are on a map. That was helpful.

We enjoyed drinks and snacks and conversation. Our flight attendant was extra awesome! When we had landed we were last off since we had to wait for them to bring up Hailey's wheelchair. She had announced to the plane before the doors opened that Hailey was in Orlando on her Make a Wish and to make sure they say hi when they passed us and SO many people did. They said, "bye Hailey" "Have fun Hailey" and that's when I started with the tears. I think people that were on that flight will remember the time there was a little girl on her make a wish on the plane with them.

When everyone was off and Josh got the wheelchair the pilot asked if Hailey wanted to come up and say hi. Once Hailey saw all those buttons up there and all the lights she was a little overwhelmed and didn't want to go. It was extra nice they invited her though!

Once we got to the front gates that's where our greeter was. Our greeter was Jo and she has a HUGE heart! She volunteers at the GKTW village and she really loves doing it and you can tell how much it means to her to get to volunteer. We got to LOVE Jo. We saw her a lot at the village so she will appear in future posts again.

We got our bags and Josh's parents were at the baggage claim. They would be experiencing this trip with us along with Josh's Grandparents and brother and his wife. There would be 9 of us! Since they didn't all get in until later we were going to head over to the village and check in. There was a lot to go over and orientation was tomorrow. There I would get our tickets to the parks and our week long vacation would begin.

I loved how when we arrived the front desk staffed said, "Welcome Home!" I couldn't wait to get everything started. Our villa was SO NICE! It had a full kitchen, living room, washer and dryer AND Detergent, 2 bedrooms, 2 bathrooms and Hailey's bathroom had a roll in shower and also a jetted tub! Tonight we are going to put everything away and in the morning before orientation I'm going to go for a walk and take a breath for the first time in almost 2 years.

Monday, April 22, 2013

There was so much to do before we left for this trip, and packing was a very daunting task. Not only were we going to the other side of the country for 7 days, but we were going with a disabled child that has special needs and required more then the average child. One thing on my list was that I needed to figure out how to get 2 cases of formula packed and to Florida. I knew we needed to take some on the plane during the flight and I didn't know how to go about doing that either. I ended up getting in touch with the TSA. They were VERY friendly. They told me that they would have everything set up so that I wouldn't have to stand in line at the security check point. They would do a pat down on me and Hailey and pat down her chair. She wouldn't have to get out of it. I also got into contact with the head manager of Southwest Airlines and he said he would make sure to get us where we needed with NO STRESS! Music to my ears! I also was able to get that CARES system for Hailey that ended up working great!

I played around with nail polish and how I should do my nails for such a special event. It didn't end up lasting but it was cute for a minute! I love nail polish!

One thing I was really looking forward to was that our family was going to be joining us on this very special trip. We did find out last minute that NONE of MY family members, that we were expecting to go, were going to be going which was very sad for me. I would have no one from my family there for me during this emotional time, and I REALLY needed it. I understand that this was going to be a very expensive trip, and excuses are going to be made, but I know if someone really wanted to go, and really wanted to be there they would have made it happen. BOTTOM LINE.

For the family members that were going to be there I thought it would be fun to make these fun buttons for them with their name on them in Mickey Ears. I miss getting to be creative!

I even made buttons for me and Josh and Hailey including buttons with her picture on them. They turned out so cute that I made even more of them for the family and they came in handy!! (More on how later.)

I made EXTRA Big ones for me and Josh to wear and one for Hailey that says, "This is MY Make a Wish Trip!"

I also played around with my hair and while I might be a little too old to rock the HairBow Hairstyle it was the Magic Kingdom and you can be a kid again right??

The week leading up to April 8th was going by so fast! I wasn't able to sleep, running over and over in my head everything that we would need. I knew I'd forget something (and I did...BOO). I went on the GKTW website and was able to read a little of what I should be expecting. There is no amount of reading you could do or videos you could watch to prepare you for your stay at the village. It is beyond emotional. Every single day there is amazing. The things they have planned for your child is something one could only dream of.

We were packed, we were excited and we were ready for our 4 HOUR FLIGHT! Yikes! How do I keep a 4 year old occupied for 4 hours on a plane?? You'll soon find out!

Saturday, April 20, 2013

In Early February when we were in Disneyland we found out the dates of our Make a Wish trip for Hailey. We had let our whole family know and invited them to ALL come along. In March I had received a phone call letting me know when our make a wish granters were going to be coming over with our itinerary. We were very excited to see our friends and these friends are the best kind. They bring gifts when they come over!

When Nancy and June came over they had a HUGE bag from the Disney Store with them. Hailey right away opened her arms. When she looked in and saw a HUGE Minnie Mouse plush she had the biggest smile and it didn't stop there.

Nancy and June also had a VERY special Barbie for Hailey. It was a Make a Wish Barbie. This Barbie is special because it's ONLY given to Wish Kids. You can't buy this in stores. It's also PINK!

We had also received an engraved photo album from Things Remembered. It has Hailey's Make a Wish on top and Give Kids the World on the bottom. I'm excited to fill the album with the memories we'll create on our trip!

We were told we were not to worry about anything. They gave us luggage to use on our trip, T-shirts, buttons, and bracelets to wear. They also gave us this awesome pink backpack that we ended up using the WHOLE trip. It came in extremely handy! They set us up with a ride to and from the airport, a rental car while we were there, anything that we would be needing they provided. Amazing!

Thank you to Nancy and June and Alyssa (behind the scenes) for everything you did for us. We loved having you be OUR wish makers!

When Hailey had surgery to have her feeding tube place we decided that we wanted to have a Genome Sequencing test done on her. I blog about this decision in earlier posts. We had assumed that this test would shed some light on which type of Leukodystrophy Hailey had and we would have a better idea of a prognosis. All we would ever hear from Doctors was, "enjoy the time you have with her." We never were told how much time that was. Before we left on our Disneyland Dry run trip in February we received the test results. It took over 20 weeks for the results to come in. They were going to sequence or "test" Hailey's genes against my blood and Josh's blood.

A little background refresher on how this was going to work and how results are reviewed:

They drew Hailey's blood

They drew my blood

They drew Josh's blood

Every persons DNA is made up of 2 strands. You get one from your mother, and one from your father.

In order or a person to have a disease you need to have the gene on both strands.

I'm NOT a fan of needles!

Nothing bothers Josh...

We are done! Now we wait...

This is the letter we received from Hailey's Neurologist:The results are back, and there is no clear smoking gun or obvious gene mutation.The testing is about 80-90% sensitive, meaning that it can miss the mutation or change in about 10-20% of cases.They did find 1 mutation/change in a gene called COG1, which causes a congenital disorder of glycosylation type IIg. This is a newly discovered gene mutation, and has only ever been reported once before in the medical/scientific literature. Hailey's mutation is an amino acid change at position 571 from an R to a Q.Usually, for a person to develop a disease, they need to have 2 mutations in a gene. Since they only found the 1 change, it should not be possible for her to develop disease from this. However, I wonder, since the testing is imperfect, whether she might have a second mutation change that got missed.The best way to test for this is to send a cheaper, faster, biochemical test called transferrin isoelectric focusing, which takes about 2-3 weeks to get results. I will arrange with the Dr. to have this tested when you see her in St. George in about 10 days.I am sorry this is so complicated, but I hope this helps explain what we know at this point.

After reading this about a MILLION times it still didn't sink in with me what I had read. I understood that we still don't know what type of Leukodystrophy Hailey has and we needed to draw more blood for another test to double check this test, but after knowing how much money we spent of this "state of the art test" and ending up with more questions and not enough answers I had a lump in my stomach. How could the test be imperfect? This test was $5,000+ and it didn't do anything for us. $5,000 should get you a test that is perfect. I was kind of mad. They should of had some kind of clause that says if you don't get any results from this test you get a refund of some sort.

So we went to St. George for Hailey's Rehab appointment and had her blood draw for this second test. We got those results back with a simple, "The test came back normal."

I am beyond confused. It's obvious Hailey has Leukodystophy, which one we don't know, but how does the test say something was found once then re-tested and that second one comes back normal?!?! I emailed the Dr. and this is what I got back:

We don't know the cause of the disease, and from all of the testing we have done we haven't found anything that needs to be actively watched for right now.
I know there is nothing more they can do and they don't know what other test to do, but talk about frustration! $5,000 which was NOT easy to come by is GONE! Out the window. That money could have been used toward so much and I think I put all my eggs in one basket. These test results were given to our family members (specifically siblings) so that they knew that this wasn't something that would happen to them if they had children or even their children's children. There would only be a 1% chance that this would extend beyond me and Josh and our children. I think they only said that because nothing can be 100% since obviously crap happens. If Josh and I had more children together (which we will NOT) then there would be a 25% chance it would happen again.

We will still continue to work with Hailey and get her whatever help she needs while she is here with us. It's pretty odd how genetics work. We are learning things I never fathomed I would need to. We aren't alone in this adventure. We really do appreciate all the help we have received from friends and strangers. The next big thing that we need to get Hailey is a wheelchair van. Now that we are beginning with therapy and more and more appointments that I am taking her by myself to, lifting her isn't getting easier.

Tuesday, April 2, 2013

Hailey's GI nurse had suggested that we find a local infusion company for Hailey's formula. Since Hailey had her feeding tube placed in Utah we were sent home with a Utah based infusion company and they were great! I really liked working with Infusion Innovations. When I ordered formula and supplies it would be here in 2 days. They gave me what ever I needed in any quantity I requested (which they should since I'm paying for it right?) They answered any question I had and I felt like they really cared when I had a problem and needed suggestions. They know about Hailey and know that we are sharing her story online so it was hard for me to have to get a new company. They found one for me called Apria, and we started the switching over process. I was already uneasy about starting over but then things went kind of wonky and I was getting so irritated that this new company didn't seem to have their information together. The first call I got from them they said that they were going to send out a new pump and new IV pole and supplies. When I told them I don't need a new pump or IV pole they said that I was getting one anyway. Then I asked who was going to be paying for this and they said they'd bill insurance and what they don't cover is my responisibilty. I said they don't cover anything and everything is my responsibility and I have these things already and I don't need them again, but they still sent them to me. They also sent me the wrong Joey Bags which hold the formula and the Flush for after a feed. They had the WRONG formula on file and they didn't send me any adapters so I didn't know how they expected me to get the formula in Hailey. So far I wasn't very happy to go from a great company to a new company that was doing every thing wrong.

Then I had Hailey's new dietitian, Courtney, call me and she's not in Las Vegas, but I had lots of questions for her and nothing I say is ever short and sweet. I had this poor girl on the phone for almost 20 minutes. She said that she's here to help and if there was anything I needed she would try to do. Well guess what? I DO have a BIG favor. I need to know how I can go about getting all this formula all the way across the country. She was very helpful. She called the airline for me and arranged for a TSA representative to help us during our check in for our Make a Wish flight. Thanks Courtney!

The representative called me today and assured me things will go as smoothly as possible. She'll have a Southwest Airlines Rep involved as well. We will have to declare Hailey's formula and medication and Hailey will have to endure a pat down, a stomach inspection to verify she indeed has a g-tube, and a wheelchair inspection. I had told her that Hailey doesn't respond well to strangers touching her and to be prepared that touching her can cause her to spasm and that if you're not prepared for that it can be uncomfortable for that unknowing person who doesn't deal with this on a daily basis. I don't want Hailey to cry and be uncomfortable and I also don't want every single person in the airport to be staring at us. The rep asked if we needed a private room and I said that we can see how this is going and if we need a private room one should be available and she agreed to have one ready.

We will see how this goes but so far I think it's going in the right direction. When I told her we were going on a trip for Hailey's Make a Wish she asked what the wish was and I said we are doing a whole Orlando trip. Hailey will be a princess at Disney World and we are also going to feed Dolphins at Sea World and we are getting a magic wand at Universal. She said that she had goosebumps. I said I still get goosebumps. Heck I still get teary eyed when I say she's going to get to be a princess at Disney World. I really need to stop doing that. It's EVERY SINGLE TIME!!

So hopefully we at least have the formula issue for traveling straightened away. I'll see how the formula company itself ends up.